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The Job to End All Others

I was in the middle of a business meeting when my 17-year-old son called the office and told the receptionist it was urgent.

“What?” I demanded when I picked up my phone. “Urgent” to my son usually meant there was nothing for lunch.

“GG just called,” he said, referring to my mother, who lived hours away in another state. “She said she was all packed and waiting for you to pick her up. She wants to know what time you’re going to be there.”

“Oh, my God,” I said, laughing and panicking at the same time. Only the day before, at her 92nd birthday party, I’d asked Mom to again consider moving in with me. Her legs were swollen, her toenails had grown into claws and her bedroom was so jumbled even the mice were confounded. Plus, she couldn’t remember how to drive home unless pointed in the right direction.

She said she’d think about it.

Mom had always expressed a preference for death by hemlock over moving in with me. So when she called to say she was waiting for me, I wasn’t exactly prepared. But I was thrilled, and I figured I’d better grab Mom before she forgot she was willing. A day later, I was on my way to pick her up. I had absolutely no clue what I was getting into.

Thinking back, I realize this was the defining moment, the beginning of the end of my job. Two months later, I would be politely terminated for being so stressed I could no longer function professionally.

To work full time and take care of a parent with dementia is a contradiction in terms — unless your full-time job is taking care of a parent with dementia. Even if I’d had more time to prepare, I still would have lost my job.

In this, I know I am not alone. The national Alzheimer’s Association reports that almost 10 million people provide unpaid care for someone with dementia and that these people are much more likely to reduce working hours or quit work than those who care for an elderly person with other problems. One study found that 43 percent of caregivers were unemployed and two-thirds of those who were employed (either part time or full time) had to go in late, leave early or take time off. And according to “Caregiving in the U.S.,” a 2009 study by the National Alliance for Caregiving and AARP, when caregiving conflicts with work, “seven in 10 caregivers report making changes such as cutting back on their working hours, changing jobs, stopping work entirely, taking a leave of absence, or other such changes.”

My friend Maria was working two jobs when her mother moved in with her. Though her teenage son was helping at home, she said, “My mother started calling me at work. She’d say, ‘I’m here. Where are you?’ I tried to tell her to call me only in an emergency, but she couldn’t differentiate. She wanted me to come home.”

Margaret Neal, author of a book on caregiving and director of Portland State University’s Institute on Aging, points out that anybody with dementia needs full-time care. “With all of the behavioral symptoms,” said Dr. Neal, “the person really can’t be left alone.”

But I thought we were different. Mom wasn’t that far gone. Mom enjoyed solitude and nature. My house, in the middle of the woods, like hers, would be perfect. I could go to work early and come home by 3:30, then take her out to our local senior center where there were activities every evening. Since it was summer, my son would be there part of the day and could help with the transition. I thought I could just transplant her routine from her house to mine.

Wrong-O.

“You can never really be prepared,” said Dr. Neal. “Dementia is so challenging. You can’t imagine how it will be.”

As soon as I brought her home, my son kept calling me at work . . . urgently. “GG’s freaking out.” “GG’s getting in her car, I don’t know where she’s going.” “GG’s talking on the phone to somebody about how she’s losing her mind.”

My mother was really unhappy. To say I was distracted is putting it mildly. I was wracked with guilt for making her leave her own home, intolerably stressed. It tortured me that I was causing my mother such pain, yet I was more convinced than ever she could no longer live alone.

It’s easy for others to say “Hire a caregiver,” or “Quit your job.” We could afford neither. My mother’s savings were exhausted, and I was in debt. My husband and I were separated, and he was disabled, unable to contribute. My father and my siblings were dead. Even with my job, it seemed I could never pay all the bills. And we were digging into a home-equity line of credit to clean and renovate my mother’s house so we could rent it.

I did hire a very part-time caregiver who wanted more money per hour than I made. My mother hated her. While I searched for someone else, I tried bringing my mother to work with me. She sat in the conference room reading while I worked in my three-person office. Every hour my mother would step into my office and inquire, with increasingly strained civility, when we would be going home. We left at lunchtime.

I toured the only local senior day care center. It was hideous: smelly, somnambulant and depressing. My mother was too vital for such a place.

Evenings out at the senior center were good, but sometimes Mom was too tired. I tried leaving for work even earlier and went home to visit Mom for lunch. I found her with her belongings, including silverware, packed in brown paper bags. All ready to go back home, she was aghast to learn she had agreed to stay with me for at least a year.

In the end, it was a blessing that I was fired. I was forgetting appointments, making mistakes and miserable. I went on unemployment, picked up some freelancing and finally got Mom’s house rented.

It wasn’t until I got fired that Mom started to relax. I am a touchstone to her, her means of orientation. When I am close by, she knows that she is where she’s supposed to be.

“You are my best friend,” she told me recently, and though I never intended to culminate my social life with Mom, it seems that she is right. We eat together, visit friends together, laugh and watch “Jeopardy!” together. What else are best friends for?

My friend Nancy, a nurse and another full-time caregiver, warns me about burnout. “After about a year, I was starting to have a nervous breakdown,” she said. Now, despite the guilt, she uses part-time hired help. “We’re the lucky ones, because we can afford it.”

It’s funny. When I brought Mom home with me, I thought I would give it a year. When my younger son graduated from high school, I thought I’d put Mom into assisted living and move on. But almost a year later, things are going pretty well. I’m paying the bills, writing in my home office, and Mom seems happy. Plus, in this economy, nobody’s rushing to give me another full-time job. I’m thinking I just might try being a caregiver for another year. Full time, of course.

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About

Thanks to the marvels of medical science, our parents are living longer than ever before. Most will spend years dependent on others for the most basic needs. That burden falls to their baby boomer children. The New Old Age blog explored this unprecedented intergenerational challenge. Paula Span will continue to write New Old Age columns twice monthly at nytimes.com/health and the conversation will continue on Twitter (@paula_span) and Facebook.